I am still pushing that &*^%$$ thing up the mountain. If I get the words down, it will be easier to edit. I need to finish getting the words down by 11 or so. Then I can start making it all make sense.
But a conversation with DH last night actually confirmed that YES, this is a tough assignment on a number of levels. But I will get it done, and get it done well, because that's what I do.
But the southern fried nerves aren't helping much, and I need to figure out the kids' respective situations. I think I need a vacation. I will not get one. I need to figure out another way to recharge.
Gah.
I found myself up at 4 when my little one wandered in. I remember his babyhood pretty vividly--more so than I expected I would, being so immersed in Nic and his issues back in that particular day. All he had to do was snuggle in next to me, and bang, there I was, almost 6 years ago, his little head tucked under my chin, Baby Paxil. All I had to do was pick him up and immediately I was in a happier place.
I remembered, too, an April afternoon 9 years ago when I was walking back from lunch with DH at the lab, Nic nestled in his sling, napping, holding my right index finger tightly as I walked with him.
I'm finding I remember more than I think I do....
Friday, July 31, 2009
Thursday, July 30, 2009
Fr M rocks
I just got off the phone with him, and really, there is nothing that is not manageable after speaking with him. God speaks through him. It's amazing.
I just told him so, as a matter of fact. Thank God he's here.
Back to work.
I just told him so, as a matter of fact. Thank God he's here.
Back to work.
Cranking
I'm probably going to blow another deadline, but Nic's daily screaming fits have taken their toll. I literally CANNOT take another day of it.
I've sequestered him in the other room with the doors closed. Hopefully that will be enough. I'm sure he's going to start howling again the minute he starts losing.
I'm in a Catch 22--I need the Wii to get stuff done, but the Wii keeps me from getting stuff done because once he gets into howling mode, all bets are off.
Hm. Lots of coffee, notes here, game on. I'd love to have a draft out of here by 5 pm.
I've sequestered him in the other room with the doors closed. Hopefully that will be enough. I'm sure he's going to start howling again the minute he starts losing.
I'm in a Catch 22--I need the Wii to get stuff done, but the Wii keeps me from getting stuff done because once he gets into howling mode, all bets are off.
Hm. Lots of coffee, notes here, game on. I'd love to have a draft out of here by 5 pm.
Wednesday, July 29, 2009
I Guess I Just Wasn't Made for these Times
I couldn't say it any better than this. Although how ironic that ML is the misunderstood, although knowing BW, I guess that's the point...
Tuesday, July 28, 2009
The Cardinal in the Window
This cheerful red bird appears to me at the most amazing times. I see cardinals everywhere, but I'm thinking of specific moments in time when I've hit my lowest ebb.
I'm thinking of the cardinal I saw on the roof in early 2005 when I hit bottom.
I'm thinking of the cardinal that alighted in the bushes outside my aunt's house, shortly before I discovered that she had died.
(I remember thinking then that the cardinal reminded me of my dad, showing up whenever I needed him most).
I wonder then if the cardinal landing in the window of our office yesterday in the midst of yet another meltdown was just serendipity or a sign to just keep me taped together for another day.
The cardinal sang, and didn't seem afraid of Nic. He retreated to a nearby bush when Nic got too loud. But he kept coming back to the window. And singing to me.
But I can't ignore how tired I am and how worn out this constant onslaught is making me. I'm feeling beaten. And I wonder if I am.
I'm thinking of the cardinal I saw on the roof in early 2005 when I hit bottom.
I'm thinking of the cardinal that alighted in the bushes outside my aunt's house, shortly before I discovered that she had died.
(I remember thinking then that the cardinal reminded me of my dad, showing up whenever I needed him most).
I wonder then if the cardinal landing in the window of our office yesterday in the midst of yet another meltdown was just serendipity or a sign to just keep me taped together for another day.
The cardinal sang, and didn't seem afraid of Nic. He retreated to a nearby bush when Nic got too loud. But he kept coming back to the window. And singing to me.
But I can't ignore how tired I am and how worn out this constant onslaught is making me. I'm feeling beaten. And I wonder if I am.
It's the stress talking
You know you're depressed when important to-do's start piling up.
And an unexpected plan or two popped on my horizon. It's not good when my immediate response is a tailspin.
I need to take care of Nic's dr stuff this week, and hopefully an objective third party will have insight I seem to lack.
The trick this week will be to keep the boat on an even keel until it gets where it's going. Finish the stuff I need to (article, resumes, billing). Figure out the school stuff...meh, that's next week. I just need to get through this one.
The relative quiet around here has been a blessing. If it weren't, I definitely would have lost my mind by now.
And an unexpected plan or two popped on my horizon. It's not good when my immediate response is a tailspin.
I need to take care of Nic's dr stuff this week, and hopefully an objective third party will have insight I seem to lack.
The trick this week will be to keep the boat on an even keel until it gets where it's going. Finish the stuff I need to (article, resumes, billing). Figure out the school stuff...meh, that's next week. I just need to get through this one.
The relative quiet around here has been a blessing. If it weren't, I definitely would have lost my mind by now.
Sunday, July 26, 2009
Good friends
It is always a wonderful thing when you can get people you love and respect all in one room, talking to one another.
So we managed, despite Nic and breakdowns (appointments with ped and neuro pending), timing, food, personality clashes among the young ones, and other fun stuff. K & A and clan surfaced directly from the shore around 4, with C & J following about an hour later and Fr M appearing about an hour after that.
I didn't have the wherewithal to moderate the conversation until we all sat down to dinner, but Fr M took a minute at the beginning of the meal to check in with me to see how I was doing. I spent a lot of the meal wondering if I oversold him to my friends, but as the evening wore on, it was evident that everyone else sees the same things I see, which is awesome.
The boys all played outside before dinner, sharing Nic's bike and scooter. M even got out our old tractor and had G working on his peddling up and down the street--a first, which cements what I already know, peer pressure can work in positive ways. J did a great job of keeping an eye on little A, K&A's almost two-year-old.
Dinner conversation flowed, peppered with funny stories about late-night infomercials, occupational hazards and observations about human nature. I just sat back and marveled a few times at how amazingly everyone connected with one another.
It was a seriously good meal. And grillmaster DH outdid himself.
We reluctantly broke up around 10:30, but the last words from K & A was that they wanted us all up on their turf, and to check with Fr M about his availability.
YEAH.
As for Nic and the meltdowns, I have a month and a half before school starts to find out what's going on and fix it.
But the clock is running.
So we managed, despite Nic and breakdowns (appointments with ped and neuro pending), timing, food, personality clashes among the young ones, and other fun stuff. K & A and clan surfaced directly from the shore around 4, with C & J following about an hour later and Fr M appearing about an hour after that.
I didn't have the wherewithal to moderate the conversation until we all sat down to dinner, but Fr M took a minute at the beginning of the meal to check in with me to see how I was doing. I spent a lot of the meal wondering if I oversold him to my friends, but as the evening wore on, it was evident that everyone else sees the same things I see, which is awesome.
The boys all played outside before dinner, sharing Nic's bike and scooter. M even got out our old tractor and had G working on his peddling up and down the street--a first, which cements what I already know, peer pressure can work in positive ways. J did a great job of keeping an eye on little A, K&A's almost two-year-old.
Dinner conversation flowed, peppered with funny stories about late-night infomercials, occupational hazards and observations about human nature. I just sat back and marveled a few times at how amazingly everyone connected with one another.
It was a seriously good meal. And grillmaster DH outdid himself.
We reluctantly broke up around 10:30, but the last words from K & A was that they wanted us all up on their turf, and to check with Fr M about his availability.
YEAH.
As for Nic and the meltdowns, I have a month and a half before school starts to find out what's going on and fix it.
But the clock is running.
Saturday, July 25, 2009
Back in Business
It's so easy to lapse into hopelessness when things go wrong. So much so that when things go well, it never fails to amaze and delight.
I *could* have let the parking ticket I found on my windshield ruin my day when I got back from the city. I shrugged, wrote a check, and dropped the thing in the mail. Nic came off the bus shortly thereafter (now finished ESY--and what, only 6 weeks until school starts again? THIS should be interesting), and we went to pick up G to meet up with friends.
Actually, given the last couple weeks, this meet up made me nervous. BUT, once we got there, my kids and my friend's kids clicked (thank goodness) and we managed to have a conversation while the kids played. And as a special bonus, Nic discovered not one, but two elevators, thus making this a most successful outing all around.
There is really no substitute for hanging out with people who get it. What amazes me is how Nic is so willing to play on the playground when we meet up with friends; my taking them to a playground by themselves often results in Nic sitting somewhere and sulking until we leave.
We parted company after a lovely time, and the boys and I made out next stop, a pool party hosted by DH's boss and wife. Of course the kids didn't like anything but the desserts (because they served *real* food that mom and dad like lol), but they both had a great time anyway. Nic played in the pool with the steady stream of kids, and G praised the bigger kids' diving while doing his little sprints alongside the pool (he went in briefly a few times). The party broke up a few hours later when thunderstorms rolled through the area.
DH instructed me to lead him out (he came over directly after work about an hour after we arrived), so I took the backroads and pointed out a great blue heron to the boys. Then I saw the rainbow.
"Wow!" Nic said. "I dreamed that, but I never saw one, before!"
So they watched the rainbow 'follow' us on the ride home.
And they slept very well.
I *could* have let the parking ticket I found on my windshield ruin my day when I got back from the city. I shrugged, wrote a check, and dropped the thing in the mail. Nic came off the bus shortly thereafter (now finished ESY--and what, only 6 weeks until school starts again? THIS should be interesting), and we went to pick up G to meet up with friends.
Actually, given the last couple weeks, this meet up made me nervous. BUT, once we got there, my kids and my friend's kids clicked (thank goodness) and we managed to have a conversation while the kids played. And as a special bonus, Nic discovered not one, but two elevators, thus making this a most successful outing all around.
There is really no substitute for hanging out with people who get it. What amazes me is how Nic is so willing to play on the playground when we meet up with friends; my taking them to a playground by themselves often results in Nic sitting somewhere and sulking until we leave.
We parted company after a lovely time, and the boys and I made out next stop, a pool party hosted by DH's boss and wife. Of course the kids didn't like anything but the desserts (because they served *real* food that mom and dad like lol), but they both had a great time anyway. Nic played in the pool with the steady stream of kids, and G praised the bigger kids' diving while doing his little sprints alongside the pool (he went in briefly a few times). The party broke up a few hours later when thunderstorms rolled through the area.
DH instructed me to lead him out (he came over directly after work about an hour after we arrived), so I took the backroads and pointed out a great blue heron to the boys. Then I saw the rainbow.
"Wow!" Nic said. "I dreamed that, but I never saw one, before!"
So they watched the rainbow 'follow' us on the ride home.
And they slept very well.
Thursday, July 23, 2009
Taking the Bull by the Horns and Steering it....
Wow, bull? Steer? It's way too early in the am to get punning.
Tennis went well; I think we have a new thing for Nic to work on. G is all over the place. I'm getting a better idea of what he needs, but he/we have a lot of work ahead.
I'm....better. Not great, but I have a deadline looming and work to do, and that's usually enough to get me back on task. G still needs a haircut and now he seems to think so, so I might get that done with him this am--and sneak in the promised trip back to the mall, just us, before Nic comes back from ESY.
How much of Nic's behavior is just summer? He started with the tantrumming yesterday over the Wii and I made him go get a drink and go out and take a spin on his bike. That seemed to work, and he seemed amenable to it.
Have to get this place in shape for K&A's meet up with Fr M this weekend....
Tennis went well; I think we have a new thing for Nic to work on. G is all over the place. I'm getting a better idea of what he needs, but he/we have a lot of work ahead.
I'm....better. Not great, but I have a deadline looming and work to do, and that's usually enough to get me back on task. G still needs a haircut and now he seems to think so, so I might get that done with him this am--and sneak in the promised trip back to the mall, just us, before Nic comes back from ESY.
How much of Nic's behavior is just summer? He started with the tantrumming yesterday over the Wii and I made him go get a drink and go out and take a spin on his bike. That seemed to work, and he seemed amenable to it.
Have to get this place in shape for K&A's meet up with Fr M this weekend....
Wednesday, July 22, 2009
Weary
Had a number of conversations yesterday/today, or the day that was Tuesday, July 21, that kept me from the edge of the abyss, at least for another day. And I see skirmishes ahead. And I'm not sure what's next.
Just sort of a sum up of the last 48 hours: Nic had a meltdown of epic proportions on Monday that I need to just accept happened and walk away from. Leading up to that, we had a decent weekend that was preceded by a bike disappearance and an eval that told me exactly why G's confidence is in the toilet.
I had an email yesterday from the SPED director suggesting--well, no, actually telling me she wants to meet with me about putting my boys on the big bus. She doesn't think it's a good idea. Nic will attend this meeting, because the big bus truly is his decision. (And really, I can't understand why they won't put an adult on the bus--I know a bus that could REALLY USE an adult, but they won't on general principle).
BUT, the whole big bus thing terrifies me because this little band that already excludes my kids could really make both my boys' lives a living hell (as if they don't already). Do I really want to fight this battle?
We went to see UP again, and it nearly ended in disaster because G started screaming during the previews that he didn't want to be there. (For crying out loud, didn't I prepare them both all day and during the car ride that we were doing this?) I parked him in my lap, talked him off his ledge (thinking "oh no, not AGAIN!"), and he was fine and in his own seat by the end of the first third of the movie. A promised trip to Crate & Barrel ensured good behavior.
And that went fine. I sighed with relief to get home without incident.
But, in talking to friends, I realized why I was so devastated yesterday. I think my friend K nailed it when she pointed out to what degree we are vigilant about our kids, their surroundings, their reactions to surroundings, and people, and expectations (and the irony of course is not lost on me that I did back-to-back trainings on BEHAVIOR for God’s sake). Always on. And being always on isn’t always useful, is it? But regardless of its utility (or lack thereof), we can’t afford to let up, even for a moment. I do spend a lot of time trying to figure stuff out, what sets either boy off, listening for things going on in a 50 yard radius at all times, and I didn't realize the extent to which this is true until I explained to hubby HOW I knew what I knew about what happened to Nic's bike. I am always on, always listening, always poised to react.
And yet, sometimes all that prep and work isn't enough...
I have to share a funny. I was in The Lady in the Water as an extra during the party scene. My kids have history a bit jumbled up and think I was in O Brother Where Art Thou. They both insist that I am the ‘third siren’ singing on track 10 who “loved Pete up and turned him into a horny toad.”
I guess it’s a cool thing that they think I am all that. I get ready to lose all hope and I have a moment remembering something like that. Maybe these moments exist to keep us from the abyss.
Just sort of a sum up of the last 48 hours: Nic had a meltdown of epic proportions on Monday that I need to just accept happened and walk away from. Leading up to that, we had a decent weekend that was preceded by a bike disappearance and an eval that told me exactly why G's confidence is in the toilet.
I had an email yesterday from the SPED director suggesting--well, no, actually telling me she wants to meet with me about putting my boys on the big bus. She doesn't think it's a good idea. Nic will attend this meeting, because the big bus truly is his decision. (And really, I can't understand why they won't put an adult on the bus--I know a bus that could REALLY USE an adult, but they won't on general principle).
BUT, the whole big bus thing terrifies me because this little band that already excludes my kids could really make both my boys' lives a living hell (as if they don't already). Do I really want to fight this battle?
We went to see UP again, and it nearly ended in disaster because G started screaming during the previews that he didn't want to be there. (For crying out loud, didn't I prepare them both all day and during the car ride that we were doing this?) I parked him in my lap, talked him off his ledge (thinking "oh no, not AGAIN!"), and he was fine and in his own seat by the end of the first third of the movie. A promised trip to Crate & Barrel ensured good behavior.
And that went fine. I sighed with relief to get home without incident.
But, in talking to friends, I realized why I was so devastated yesterday. I think my friend K nailed it when she pointed out to what degree we are vigilant about our kids, their surroundings, their reactions to surroundings, and people, and expectations (and the irony of course is not lost on me that I did back-to-back trainings on BEHAVIOR for God’s sake). Always on. And being always on isn’t always useful, is it? But regardless of its utility (or lack thereof), we can’t afford to let up, even for a moment. I do spend a lot of time trying to figure stuff out, what sets either boy off, listening for things going on in a 50 yard radius at all times, and I didn't realize the extent to which this is true until I explained to hubby HOW I knew what I knew about what happened to Nic's bike. I am always on, always listening, always poised to react.
And yet, sometimes all that prep and work isn't enough...
I have to share a funny. I was in The Lady in the Water as an extra during the party scene. My kids have history a bit jumbled up and think I was in O Brother Where Art Thou. They both insist that I am the ‘third siren’ singing on track 10 who “loved Pete up and turned him into a horny toad.”
I guess it’s a cool thing that they think I am all that. I get ready to lose all hope and I have a moment remembering something like that. Maybe these moments exist to keep us from the abyss.
Tuesday, July 21, 2009
Tomorrow is another day
Bad, bad, bad meltdown at the local mall today. Literally, this is the first time in YEARS that Nic has done this.
Doing the autopsy, as ever, have it narrowed down to a confluence of 4 or 5 factors. Getting the ped and neuro involved; this has to get figured out before school starts.
And as usual, G got shafted. I'll make this up with some one-on-one time this week with him. But stuff like this, if left unchecked, causes permanent rifts. And neither boy can afford that.
Ah, Nic, every day you figure out a different way to break my heart.
Doing the autopsy, as ever, have it narrowed down to a confluence of 4 or 5 factors. Getting the ped and neuro involved; this has to get figured out before school starts.
And as usual, G got shafted. I'll make this up with some one-on-one time this week with him. But stuff like this, if left unchecked, causes permanent rifts. And neither boy can afford that.
Ah, Nic, every day you figure out a different way to break my heart.
Monday, July 20, 2009
Broadsword Unsheathed
I am NOT in the mood for anybody's cr@P (or as my friend N would have it, CARP) this week.
We did have a good weekend; we went to a friend's for a barbecue on Saturday after a visit to the Insectarium and although a visit got cancelled yesterday, we made the most of a fundraiser for the boys' tennis program and got some stuff done that needed getting done.
Stopped over to say hi to Fr M after mass. Nic does awesome these days (just two years ago I wrote here about how he got stuck under a pew and 11 adults surrounded him trying to unstick him). G didn't have such a great day, but even his worst now was better than Nic's best then, so I can't complain.
So, this week will be getting stuff in order, preparing for MORE CHANGE and getting a 3K article written.
And as for what surrounds us, meh, it is what it is. My friend K put it best when she wrote "daily barrage of petty and draining crap." Eh, bien.
We did have a good weekend; we went to a friend's for a barbecue on Saturday after a visit to the Insectarium and although a visit got cancelled yesterday, we made the most of a fundraiser for the boys' tennis program and got some stuff done that needed getting done.
Stopped over to say hi to Fr M after mass. Nic does awesome these days (just two years ago I wrote here about how he got stuck under a pew and 11 adults surrounded him trying to unstick him). G didn't have such a great day, but even his worst now was better than Nic's best then, so I can't complain.
So, this week will be getting stuff in order, preparing for MORE CHANGE and getting a 3K article written.
And as for what surrounds us, meh, it is what it is. My friend K put it best when she wrote "daily barrage of petty and draining crap." Eh, bien.
Sunday, July 19, 2009
Singing a Different Tune (written Friday July 17)
Back when Nic was dx'ed, nearly 7 years ago, my younger sister bought me a card that was signed by all my family members and generous donations to de-fray the cost of the specialist we took Nic to. It was a bear walking and playing a fish, and the note said to take a different look at the situation, looking for the best sides of it.
It's clear my last few notes upset a few people. That was not the intent, although if it got people thinking about how they treat people outside the mold, then I'm not worried about ticking people off. After all, this is my life, and I am not in the business of sanitizing it to make it palatable for the masses.
Anyway, back to playing a musical fish. I needed to spend today with my kids, and that's what I did. G helped me make chocolate chip banana bread, practicing breaking eggs (his method is effective, but I need to pick the whole shell out of the batter), measuring ingredients, and doing the hard work of mixing the batter (I helped with the last). His satisfaction at having helped make it was palpable.
I straightened out Gs NOREP with the SPED director--she called me to sign off on it, and I asked if she could wait until Nic comes back from summer school "because he'll let me have it if I come over without him and he misses an elevator ride."
We had lunch together when Nic came in, and he spent an hour or so decompressing before we headed out. We stopped at the barn, Nic had his elevator ride, and everyone made a fuss of both boys.
Then we headed into the city via train, something we haven't done in quite a while. We go in, and basically ride elevators from The Gallery to 30th Street. Or that's what we did when G was in a stroller.
Things are different, now. Nic and G take turns deciding where we go and what we do. We spent time reading in several bookstores. Nic stood side by side with me going through used DVDs at FYE to see if we could find a used copy of O Brother Where Art Thou (and as an aside, I never thought it would be possible to stand shoulder to shoulder with my older son looking through ANYTHING--this is huge).
We finished up at B&N on Ritenhouse Square and I announced that if we were going to make it home to dinner at a reasonable hour, we needed to skip 30th St and head straight for Suburban. And Nic was flexible. The last elevator took us to our platform as our train pulled into the station.
I instructed Nic what to say to the conductor to buy his return trip ticket (we used an old ticket I had from the last time we were in the city--and I had my own for the way in and out), and he bought his own ticket. He also learned how to read a train schedule AND cut his chicken cutlet at dinner tonight.
And Andy reported that the grandson came over and apologized when he pulled up this evening.
It's going to be a good weekend.
It's clear my last few notes upset a few people. That was not the intent, although if it got people thinking about how they treat people outside the mold, then I'm not worried about ticking people off. After all, this is my life, and I am not in the business of sanitizing it to make it palatable for the masses.
Anyway, back to playing a musical fish. I needed to spend today with my kids, and that's what I did. G helped me make chocolate chip banana bread, practicing breaking eggs (his method is effective, but I need to pick the whole shell out of the batter), measuring ingredients, and doing the hard work of mixing the batter (I helped with the last). His satisfaction at having helped make it was palpable.
I straightened out Gs NOREP with the SPED director--she called me to sign off on it, and I asked if she could wait until Nic comes back from summer school "because he'll let me have it if I come over without him and he misses an elevator ride."
We had lunch together when Nic came in, and he spent an hour or so decompressing before we headed out. We stopped at the barn, Nic had his elevator ride, and everyone made a fuss of both boys.
Then we headed into the city via train, something we haven't done in quite a while. We go in, and basically ride elevators from The Gallery to 30th Street. Or that's what we did when G was in a stroller.
Things are different, now. Nic and G take turns deciding where we go and what we do. We spent time reading in several bookstores. Nic stood side by side with me going through used DVDs at FYE to see if we could find a used copy of O Brother Where Art Thou (and as an aside, I never thought it would be possible to stand shoulder to shoulder with my older son looking through ANYTHING--this is huge).
We finished up at B&N on Ritenhouse Square and I announced that if we were going to make it home to dinner at a reasonable hour, we needed to skip 30th St and head straight for Suburban. And Nic was flexible. The last elevator took us to our platform as our train pulled into the station.
I instructed Nic what to say to the conductor to buy his return trip ticket (we used an old ticket I had from the last time we were in the city--and I had my own for the way in and out), and he bought his own ticket. He also learned how to read a train schedule AND cut his chicken cutlet at dinner tonight.
And Andy reported that the grandson came over and apologized when he pulled up this evening.
It's going to be a good weekend.
Friday, July 17, 2009
Lost and Found
When I took out the trash this morning, I noticed Nic's bike was gone.
At first, I thought my husband had moved it, but no, the trash bins were still blocking our garage. My heart raced; I ran first into Perky's back yard, and then I remembered that the neighbor's grandson from across the street (the one who called Nic butthole) was shooting hoops in Perky's driveway yesterday evening.
So I ran across the street and looked down their driveway, thinking that it probably wasn't there because these neighbors wouldn't let their grandson act like a jerk if they knew about it.
I ran into my house and put on my sneakers, thinking to scour the neighborhood. Fortunately, I didn't have far to go; the bike was behind Capri2's house, in their driveway.
I sighed in relief and cursed at the same time. This is exactly where the kid would dump the bike. Just to be spiteful.
I hand wrote a note to his grandmother, explaining that Nic has autism, and had he discovered the missing bike he would have been inconsolable. In the future, please have D knock and ask before he uses Nic's things.
(that will never happen)
I put Nic's bike in the garage. I have half a mind to just pack it and bring it wherever we go, because he likes to ride now.
My heart rate is back to normal. But now I have officially had it.
At first, I thought my husband had moved it, but no, the trash bins were still blocking our garage. My heart raced; I ran first into Perky's back yard, and then I remembered that the neighbor's grandson from across the street (the one who called Nic butthole) was shooting hoops in Perky's driveway yesterday evening.
So I ran across the street and looked down their driveway, thinking that it probably wasn't there because these neighbors wouldn't let their grandson act like a jerk if they knew about it.
I ran into my house and put on my sneakers, thinking to scour the neighborhood. Fortunately, I didn't have far to go; the bike was behind Capri2's house, in their driveway.
I sighed in relief and cursed at the same time. This is exactly where the kid would dump the bike. Just to be spiteful.
I hand wrote a note to his grandmother, explaining that Nic has autism, and had he discovered the missing bike he would have been inconsolable. In the future, please have D knock and ask before he uses Nic's things.
(that will never happen)
I put Nic's bike in the garage. I have half a mind to just pack it and bring it wherever we go, because he likes to ride now.
My heart rate is back to normal. But now I have officially had it.
Thursday, July 16, 2009
Snares and Trip Wires
We just finished a much-needed PT eval for G. And the news was not good.
Never mind the sheer magnitude of his core strength deficits. What grabbed me by the throat was the sudden realization that G's confidence has been slowly but surely eroding to the point that he almost doesn't exist anymore. My independent little man has shrunken to the shadows.
His physical state is a significant piece of that. And the neighborhood sitch is doing the rest of the damage.
We spent the rest of the morning at a nature park and a playground before heading over to Nic's summer school's open house. I was okay through all this, just processing, fitting the pieces of my son (who is also probably depressed--how could I have missed that?) together, trying to figure out what I need to do next.
We dropped G off at his ESY, and a tiny boy clutched G's teacher's hand. He was sobbing quietly.
"Fourth day, separation anxiety," she explained to me.
"My....mommy.....will......wait for me," the little boy said haltingly, between sobs.
It was like getting punched in the chest. Suddenly, it was six years ago on an April morning, and that little boy's name was Nic. Almost the same exact words.
I sobbed all the way home. Nic asked me what my problem was.
We are in a perpetual flood, and I am barely staying afloat, and I feel both of them slipping away, and in trying to keep a tighter grasp on one, the other is losing his hold, and I have to decide which of us I'm saving.
But right now all I can think is that I failed G. Miserably.
Never mind the sheer magnitude of his core strength deficits. What grabbed me by the throat was the sudden realization that G's confidence has been slowly but surely eroding to the point that he almost doesn't exist anymore. My independent little man has shrunken to the shadows.
His physical state is a significant piece of that. And the neighborhood sitch is doing the rest of the damage.
We spent the rest of the morning at a nature park and a playground before heading over to Nic's summer school's open house. I was okay through all this, just processing, fitting the pieces of my son (who is also probably depressed--how could I have missed that?) together, trying to figure out what I need to do next.
We dropped G off at his ESY, and a tiny boy clutched G's teacher's hand. He was sobbing quietly.
"Fourth day, separation anxiety," she explained to me.
"My....mommy.....will......wait for me," the little boy said haltingly, between sobs.
It was like getting punched in the chest. Suddenly, it was six years ago on an April morning, and that little boy's name was Nic. Almost the same exact words.
I sobbed all the way home. Nic asked me what my problem was.
We are in a perpetual flood, and I am barely staying afloat, and I feel both of them slipping away, and in trying to keep a tighter grasp on one, the other is losing his hold, and I have to decide which of us I'm saving.
But right now all I can think is that I failed G. Miserably.
Monday, July 13, 2009
Why bother?
I've actually had people ask me more than once why I care so much about including my kids in typical activities with typical peers.
Why it matters is very simple. Seventy-five percent of disabled are unemployed. A vast majority of them were in segregated placements. Educational services and a vast majority of supports end at age 21. And then what? Folks, contrary to popular belief, there IS no special ed track in the real world.
Having said that, the water-cooler skills, the collaboration skills, all start HERE. In the neighborhood, in the community, in the public schools. My kids, because of the nature of their disability, LACK the hardwiring that make these skills second nature to their neurotypical peers. And for that reason, they need to be among them to have this behavior modeled.
Yes, I understand that not all NT behavior is good. We have a lot of bad modeling that happens right in our vicinity that I'd rather not expose my boys to, anyway. It's been instructive, however, on multiple levels. My kids have a level of empathy and compassion that many of their NT peers sorely lack. I believe they can be positive role models for that very reason.
My kids stand to gain in an inclusive environment, but the children who willingly choose to interact with mine will gain so much more. Empathy, caring, compassion--all these start at home, but it doesn't hurt to reinforce these values in the community.
Does it?
Why it matters is very simple. Seventy-five percent of disabled are unemployed. A vast majority of them were in segregated placements. Educational services and a vast majority of supports end at age 21. And then what? Folks, contrary to popular belief, there IS no special ed track in the real world.
Having said that, the water-cooler skills, the collaboration skills, all start HERE. In the neighborhood, in the community, in the public schools. My kids, because of the nature of their disability, LACK the hardwiring that make these skills second nature to their neurotypical peers. And for that reason, they need to be among them to have this behavior modeled.
Yes, I understand that not all NT behavior is good. We have a lot of bad modeling that happens right in our vicinity that I'd rather not expose my boys to, anyway. It's been instructive, however, on multiple levels. My kids have a level of empathy and compassion that many of their NT peers sorely lack. I believe they can be positive role models for that very reason.
My kids stand to gain in an inclusive environment, but the children who willingly choose to interact with mine will gain so much more. Empathy, caring, compassion--all these start at home, but it doesn't hurt to reinforce these values in the community.
Does it?
Sunday, July 12, 2009
Trained Up and Life Happens
So I had my training yesterday to be a parent presenter for our local educator coalition. Although I've been doing trainings now for a couple years, I found the confab yesterday very informative and a lot of fun. I met a few people I've only known by name and reputation, but the really awesome thing is that I somehow already knew everyone in the room.
Very cool stuff. And it was kind of nice having it on the campus of my alma mater--how it's grown!
We left for K and A's after DH finished the food and I packed the van. Even though the skies threatened to open up, they didn't do so until long after A shut down the water slide, which was also well after dark.
It was a beautiful thing watching Nic blend in with the rest of the boys. He really can and does look like any other kid when he is surrounded by people who believe in him.
*sigh*
G OTOH is looking spacier and spacier. He's not eating. I'm not sure what to do with him. He is going for a PT eval this Thursday--it probably would not hurt to get independent psych, ed, and auditory evals done, either.
But the party, as ever, was incredible despite the fact that the camp out was rained out. Good people, good food, good music, and the kids continue to sleep in--what more could you ask for? I'm reminded yet again that my kids are loved, and really, that's all I care about. Everything else is a bonus.
And the sun has come up on a beautiful day. I have a few ideas in mind about how we should spend it...
This coming week will be busy--I'm running a couple more trainings, and I have to talk to the boss about her upcoming departure. Also trying to decide what I need to do there. R invited me to join her at the shore on Friday--and K reminded me she would be down there too. Not sure how I feel about pulling Nic out of ESY, so probably not.
And I'm working on a new article. Have to bother S about the work he's sending me, now looking like August (which is fine!).
Feeling good about life. Spending time with good friends has a way of snapping the rest of this crazy world into its proper perspective.
Very cool stuff. And it was kind of nice having it on the campus of my alma mater--how it's grown!
We left for K and A's after DH finished the food and I packed the van. Even though the skies threatened to open up, they didn't do so until long after A shut down the water slide, which was also well after dark.
It was a beautiful thing watching Nic blend in with the rest of the boys. He really can and does look like any other kid when he is surrounded by people who believe in him.
*sigh*
G OTOH is looking spacier and spacier. He's not eating. I'm not sure what to do with him. He is going for a PT eval this Thursday--it probably would not hurt to get independent psych, ed, and auditory evals done, either.
But the party, as ever, was incredible despite the fact that the camp out was rained out. Good people, good food, good music, and the kids continue to sleep in--what more could you ask for? I'm reminded yet again that my kids are loved, and really, that's all I care about. Everything else is a bonus.
And the sun has come up on a beautiful day. I have a few ideas in mind about how we should spend it...
This coming week will be busy--I'm running a couple more trainings, and I have to talk to the boss about her upcoming departure. Also trying to decide what I need to do there. R invited me to join her at the shore on Friday--and K reminded me she would be down there too. Not sure how I feel about pulling Nic out of ESY, so probably not.
And I'm working on a new article. Have to bother S about the work he's sending me, now looking like August (which is fine!).
Feeling good about life. Spending time with good friends has a way of snapping the rest of this crazy world into its proper perspective.
Thursday, July 9, 2009
Making it all work
Gave a great presentation in Harrisburg with one of my partners in crime today. We will repeat the performance elsewhere next week.
Perky threw her annual 'all the kids in the neighborhood but mine' bash last night. Wasn't an issue because we were at tennis the first part of the evening, playing Wii the second, and her DH knew we would be on the phone to the township gendarmes if they were carrying on after Nic's lights were out (after all, his bus comes at 7:15 am).
Besides, we are going to a much cooler party this weekend, anyway.
Nic did awesome at tennis--miles and light years better than when we started two years ago. I'm coaching his and Gabriel's section, and it's a lot of fun.
This evening we went to see if his friend M was around. He wasn't, but K and C were outside playing at their dad's house, and apparently we are now welcome there. Very cool. Another option and walking distance, too.
This summer is shaping up to be pretty damn awesome.
Perky threw her annual 'all the kids in the neighborhood but mine' bash last night. Wasn't an issue because we were at tennis the first part of the evening, playing Wii the second, and her DH knew we would be on the phone to the township gendarmes if they were carrying on after Nic's lights were out (after all, his bus comes at 7:15 am).
Besides, we are going to a much cooler party this weekend, anyway.
Nic did awesome at tennis--miles and light years better than when we started two years ago. I'm coaching his and Gabriel's section, and it's a lot of fun.
This evening we went to see if his friend M was around. He wasn't, but K and C were outside playing at their dad's house, and apparently we are now welcome there. Very cool. Another option and walking distance, too.
This summer is shaping up to be pretty damn awesome.
Wednesday, July 8, 2009
Chasing Normalcy
This is a rather pointless pursuit, but I do it for no other reason than to flip off the neighbors.
Maybe I do it also to prove to myself that my kids *do* have full, rich and fulfilling lives.
The kids are happy. But it's not lost on me that Nic won't go out when the Perkettes and Mini Capris are out. And it's not lost on me that G is crushed when he says hello to same and is ignored. ("Don't waste your breath," I admonished G rather loudly--and I hope Perky heard me.)
So we went up to the cool pool with a picnic dinner on Monday--Nic sailed almost the entire time in the lazy river. G was uncharacteristically shy and unadventurous. He used to be my water boy, so I'm not sure what's going on. Also on Monday, another id'ed kid knocked on our door--and it turns out he lives around the corner.
I can see some normal activity ensuing as a result.
Yesterday Nic and I went out and met up with some friends. G helped me clean out the back of the van, we met up with dad for dinner and went to walk the mall for a bit.
Today we have tennis and I am coaching.
And we have a whole raft of activities planned for the rest of this month into next. August will be tricky--no ESY.
But we'll figure it out.
Maybe I do it also to prove to myself that my kids *do* have full, rich and fulfilling lives.
The kids are happy. But it's not lost on me that Nic won't go out when the Perkettes and Mini Capris are out. And it's not lost on me that G is crushed when he says hello to same and is ignored. ("Don't waste your breath," I admonished G rather loudly--and I hope Perky heard me.)
So we went up to the cool pool with a picnic dinner on Monday--Nic sailed almost the entire time in the lazy river. G was uncharacteristically shy and unadventurous. He used to be my water boy, so I'm not sure what's going on. Also on Monday, another id'ed kid knocked on our door--and it turns out he lives around the corner.
I can see some normal activity ensuing as a result.
Yesterday Nic and I went out and met up with some friends. G helped me clean out the back of the van, we met up with dad for dinner and went to walk the mall for a bit.
Today we have tennis and I am coaching.
And we have a whole raft of activities planned for the rest of this month into next. August will be tricky--no ESY.
But we'll figure it out.
Monday, July 6, 2009
Anxiety Looms Large
I get tired of autopsying (is that even a word?) Nic's social situation, but it is the one thing that literally keeps me up nights.
I can't understand why when we get together with friends, he's FINE. He really is just like any other kid. But when we get to the neighborhood, to school situations, he really looks challenged.
I had a lightbulb moment last night. I think it has to with the intersection of Nic's anxiety and what people expect of him. Nic is really good at sizing up situations and producing exactly what is expected of him. I think what we're running into is the soft bigotry of low expectations--aforementioned people expect less of Nic and get exactly that.
Ugh.
*head banging*
So I guess my next trick will be to convince his school, the neighborhood, and any other interested parties that he is FINE, or at least that they need to think of him less as autistic and more as Nic.
"Hey Rocky, watch me pull a rabbit out of my hat...."
I can't understand why when we get together with friends, he's FINE. He really is just like any other kid. But when we get to the neighborhood, to school situations, he really looks challenged.
I had a lightbulb moment last night. I think it has to with the intersection of Nic's anxiety and what people expect of him. Nic is really good at sizing up situations and producing exactly what is expected of him. I think what we're running into is the soft bigotry of low expectations--aforementioned people expect less of Nic and get exactly that.
Ugh.
*head banging*
So I guess my next trick will be to convince his school, the neighborhood, and any other interested parties that he is FINE, or at least that they need to think of him less as autistic and more as Nic.
"Hey Rocky, watch me pull a rabbit out of my hat...."
Saturday, July 4, 2009
Making Differences in Unexpected Ways
So we went out to the parade--I wanted to go down the street to avoid Perky and the Perkettes, but Nic wanted to sit with them. As luck would have it, I had a nice woman to talk to on the other side of neighborhood assoc central.
Her name was Marie, widowed, no kids. We ended up talking together long after the last division headed for our little downtown. I may never see her again, but it was one of those encounters you know will have reverberations on both sides for years to come.
I'm glad we stayed put this year. It was a lovely morning.
And the kids had fun, too.
Her name was Marie, widowed, no kids. We ended up talking together long after the last division headed for our little downtown. I may never see her again, but it was one of those encounters you know will have reverberations on both sides for years to come.
I'm glad we stayed put this year. It was a lovely morning.
And the kids had fun, too.
More friends and a good time was had by all
Spent the better part of yesterday doing a clear out in a big way. There are many things going out in the next round of Purple Heart pick up. Nic helped me do a toy purge, and I am going through and looking to get rid of more stuff. The boys' paperwork is more or less in order. And they did help clean up at bit. DH came in from work and I left him to finish up while the boys and I hit the library and then the playground.
The library was only a pit stop--my goal was to get them to the playground since they were stuck inside while I was beating the downstairs into shape. "How many minutes, mom?" Nic wanted to know. It had taken 16 minutes to get there from the library, so I told him "35---go play."
After a while, the little boy stopped by the next table and told his mom "I want that boy in the Eagles shirt to play with me, but he's ignoring me."
I chuckled and put my two cents in. "Here's a hint. Ask him about elevators?"
The kid squinted at me. "Really?"
I nodded. "Trust me."
He shrugged and ran off to try it out. His mom turned to me, and we got to talking. She's older, with 7 year old twin boys, and the one who stopped was the chatty one (who is actually quite a nice little guy--his twin was steadier and somewhat more easy-going, and also a nice kid).
And it wasn't long before the chatty one had engaged Nic in a game ("It worked!" he told me with some awe) and G was involved. So we stayed there about an hour past the 35 minutes, which made me happy. I chatted with mom while our kids played.
Again, so normal, so mundane, SO not my life!
We swapped phone numbers and I gathered the boys because G started to chat up any one who stopped near him about WALL-E and UP.
Overall, a successful trip. New friends and a good time--not bad.
So we will have friends by today for a cookout, and of course MIL and dog land later this am. She's going back tomorrow night. I'm not letting her wreck my good time.
Or anyone, for that matter.
Yeah. The kids are all right.
The library was only a pit stop--my goal was to get them to the playground since they were stuck inside while I was beating the downstairs into shape. "How many minutes, mom?" Nic wanted to know. It had taken 16 minutes to get there from the library, so I told him "35---go play."
After a while, the little boy stopped by the next table and told his mom "I want that boy in the Eagles shirt to play with me, but he's ignoring me."
I chuckled and put my two cents in. "Here's a hint. Ask him about elevators?"
The kid squinted at me. "Really?"
I nodded. "Trust me."
He shrugged and ran off to try it out. His mom turned to me, and we got to talking. She's older, with 7 year old twin boys, and the one who stopped was the chatty one (who is actually quite a nice little guy--his twin was steadier and somewhat more easy-going, and also a nice kid).
And it wasn't long before the chatty one had engaged Nic in a game ("It worked!" he told me with some awe) and G was involved. So we stayed there about an hour past the 35 minutes, which made me happy. I chatted with mom while our kids played.
Again, so normal, so mundane, SO not my life!
We swapped phone numbers and I gathered the boys because G started to chat up any one who stopped near him about WALL-E and UP.
Overall, a successful trip. New friends and a good time--not bad.
So we will have friends by today for a cookout, and of course MIL and dog land later this am. She's going back tomorrow night. I'm not letting her wreck my good time.
Or anyone, for that matter.
Yeah. The kids are all right.
Friday, July 3, 2009
Maybe high school didn't suck after all
So I was tooling around Facebook the other day when my inbox flag popped up. It was a note from one of my friends from high school, inviting me and my boys over to swim with her and her girls.
About a fifth of my friends on Facebook are from high school; the balance is work acquaintances, adult friends, fellow autism moms and dads and a couple college friends and grade school classmates thrown in for good measure. I am very open about my kids' differences, so the invite coming in spite of all that was a pleasant surprise.
This friend and I chatted on the phone and set a time for me to come over with the boys. I made some chocolate chip banana bread with Nic's help, picked up G and headed over.
AND...we had a marvelous time. Her girls (all four of them) played well with my two, and she said a few times "They are really good kids!" I know that, but it's nice to hear some one else say it.
So, when we left, we left the door open to future meetups. It was great seeing N again--she hasn't changed a bit, and we are both very much on the same page in many ways.
What a treat for me. What a treat for the boys.
It was a good day.
About a fifth of my friends on Facebook are from high school; the balance is work acquaintances, adult friends, fellow autism moms and dads and a couple college friends and grade school classmates thrown in for good measure. I am very open about my kids' differences, so the invite coming in spite of all that was a pleasant surprise.
This friend and I chatted on the phone and set a time for me to come over with the boys. I made some chocolate chip banana bread with Nic's help, picked up G and headed over.
AND...we had a marvelous time. Her girls (all four of them) played well with my two, and she said a few times "They are really good kids!" I know that, but it's nice to hear some one else say it.
So, when we left, we left the door open to future meetups. It was great seeing N again--she hasn't changed a bit, and we are both very much on the same page in many ways.
What a treat for me. What a treat for the boys.
It was a good day.
Thursday, July 2, 2009
Steady Ender
Walking into the office this am, I was reminded of something I hadn't thought about in years. The phrase 'steady ender' popped unbidden into my head, and I remembered that in an effort to blend in my elementary school playground, I took the end at jump rope--and stayed there.
Why? The other girls used to make fun of me putting my arms up before I jumped in.
I'm not sure what happened, whether I got tired of always being on the end or if some one felt sorry for me, but I became a group project--the whole bunch wanted me to jump in, and jump rope, like the rest of them.
"Keep your arms DOWN," I remember Rita screaming at me. Or it was Tina? One of the big mouths, but I'll be damned if I can remember which one it was. And I learned how to jump in with my arms down, just like the rest of them.
Which leads me to wonder, how many of Nic's mistakes does Nic need to make on his own? How many times does he need to get schooled on the playground? At one point do I step back and trust his peers enough to take on teaching Nic? The other day in front of B's house was instructive to me--he is too old to have mom coach him in front of his peers if he wants to fit in. I will need to step back and let him fly or fail.
Failure is the best teacher--but am I ready to step back?
And is Nic ready for me to step back?
Why? The other girls used to make fun of me putting my arms up before I jumped in.
I'm not sure what happened, whether I got tired of always being on the end or if some one felt sorry for me, but I became a group project--the whole bunch wanted me to jump in, and jump rope, like the rest of them.
"Keep your arms DOWN," I remember Rita screaming at me. Or it was Tina? One of the big mouths, but I'll be damned if I can remember which one it was. And I learned how to jump in with my arms down, just like the rest of them.
Which leads me to wonder, how many of Nic's mistakes does Nic need to make on his own? How many times does he need to get schooled on the playground? At one point do I step back and trust his peers enough to take on teaching Nic? The other day in front of B's house was instructive to me--he is too old to have mom coach him in front of his peers if he wants to fit in. I will need to step back and let him fly or fail.
Failure is the best teacher--but am I ready to step back?
And is Nic ready for me to step back?
Wednesday, July 1, 2009
Never Normal
Every so often I get hit with a big dose of reality regarding how functional my older boy is. Yesterday was one of those days.
We set out to go to the community pool--and got rained out, but never mind that. Nic wanted to ride his bike, and as long as he had his helmet on, that wasn't a problem. On the way, we encountered B's brother, who was just coming back from summer playground at the middle school. We invited him to come to the pool with us, and he countered with an invite to his pool.
I said quickly we weren't looking for an invite, just that he was welcome to join us at the pool.
B was out front playing soccer with two friends and happy to see Nic. And he invited Nic to play.
Nic immediately twisted what B said. I knew his staying was a no-go, and said so, and told B we'd see him another time. Nic got it, and said goodbye.
What I wouldn't give to be able to let him go and do something as normal as thi--letting him go play on his own at some one else's house. But I know Nic--he can't do this. He'd try to go into B's house and play with his toys. Or put mud in his pool. He just doesn't know how to *play* and he is past the age where I can stay and oversee him at some one else's house.
What I wouldn't give to be able to have this piece of 'normal.' Yet, I know we're not there.
Not even close.
We set out to go to the community pool--and got rained out, but never mind that. Nic wanted to ride his bike, and as long as he had his helmet on, that wasn't a problem. On the way, we encountered B's brother, who was just coming back from summer playground at the middle school. We invited him to come to the pool with us, and he countered with an invite to his pool.
I said quickly we weren't looking for an invite, just that he was welcome to join us at the pool.
B was out front playing soccer with two friends and happy to see Nic. And he invited Nic to play.
Nic immediately twisted what B said. I knew his staying was a no-go, and said so, and told B we'd see him another time. Nic got it, and said goodbye.
What I wouldn't give to be able to let him go and do something as normal as thi--letting him go play on his own at some one else's house. But I know Nic--he can't do this. He'd try to go into B's house and play with his toys. Or put mud in his pool. He just doesn't know how to *play* and he is past the age where I can stay and oversee him at some one else's house.
What I wouldn't give to be able to have this piece of 'normal.' Yet, I know we're not there.
Not even close.
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